Four weeks have passed.
My blood work was done the day of stoma clinic last week so I was on schedule to receive my final loading dose of Vedolizumab then on to a regular schedule of having it.
As I said in my last post about Vedo, we still didn’t know if this was working yet or if it was going to work. We just had to complete the loading doses – week 0, week 2 and week 6 – before moving onto the usual eight weekly infusion schedule. I haven’t thought or planned past receiving that fourth dose in early January. It’s probably because:
- we didn’t get over that dose last year.
- my GI and I have yet to meet since my last admission, surgery and starting this again to discuss the future of my treatment plan. This will now include the outcome of my Nottingham appt in September too; its been so long since I saw my GI!
- I don’t dare think beyond the end of 2016 and into 2017. I don’t want to bring any negative thoughts into this, seen as I feel so well lately.
That being said, my infusion was good! Got a vein for my cannula on the first attempt and despite being uncomfortable, its probably due to not being poked for so long that I’ve become a tad sensitive. It was the same on my blood draw last week too. I’m taking this as a good sign. It might also mean that soon I will be able to alternate arms for cannulation – my right elbow crease is completely scarred from all the cannuals over the summer (I count at least three dozen in as many months!).
After waiting for it to be reconsistuted, it was a quick 30 minute infusion and 30 minutes of post-infusion observations. I was also waiting for my stoma nurse to come and check my ileostomy – it had been playing up since the morning before, when she was changed. Luckily, things haven’t deteriated too much; my template has changed though, creating a small increase in my peristomal rash but that’s now clearing up.
Considering how much I always tend to think ahead and try to plan for the worse; I’m not doing that so much these days. Maybe its because I feel so well, I don’t feel the need to plan for something bad to happen. I have still yet to completely loose it about the fact that I’ve now gone the longest period of time without any problems this year… and all it took was a major surgery and loosing my colon!
My IBD nurse gave me this nugget of wisdom –
“People tend to forget about their appointments, miss them completely or are late, because they feel so well.”
For me, I don’t think that will happen. Not because I don’t think I will ever be so well, it just doesn’t cross my mind but because it is still too early to really tell what this surgery is going to give me. I hope that by keeping myself well informed of my choices, I can sort of relax about the future of my disease and let it just melt away into my every day life. Or even become a second thought, instead of a first thought sort of thing. That would be nice, ideal.
I am seeing this surgery as that chance to take back everything I gave up because I was unwell. The last eighteen months – April 2015 until August 2016 – have been awful for my health. I had to consider it first before anything else; I planned the type of jobs I could afford to do around it, making sure I would be able to manage if I needed time off. Worried constantly about my relationship, family life, working life and my actual body because this disease would not give me a small respite from its constant shitty moments of ruining my plans, my life.
My next infusion is on January 9th 2017.
Wow, 2017. Let’s hope its a good one this time, eh?